Unrecognizable – LB Post 17

Heart wrenching story of LB's Journey through open heart surgery. Strength, fighter, and inspiration, down syndrome, heart defect www.abitofsimplicity.com

We anxiously walked into LB’s room ready to start the day on Wednesday.

Tuesday had ended on such a high note, one of hope and encouragement for this process. This led us into that day expecting the same thing.

But when I walked in and saw her face, I was hit with the sharp pain of shock.

LB layed there almost unrecognizable.

Her entire face was swollen.

So swollen, that it was raising over and around and the tubes, tape, and wires that were attached to her head.

Her eyes were only tiny slits in her face.

Her skin looked like it would burst at any contact.

I was in disbelief. We stood at the door and I couldn’t breathe – silently praying that we had walked into the wrong room,

but I knew we hadn’t.

I knew that it was my sweet baby laying there in that bed so swollen and it broke my heart.

Heart wrenching story of LB's Journey through open heart surgery. Strength, fighter, and inspiration www.abitofsimplicity.com

My body immediately gravitated towards her and I gently touched her face.

With tears in my eyes I looked at the nurse and with a whisper said, “She’s so swollen.”

She tried to reassure me that it was normal, and actually expected. After major surgery, it often takes awhile for the kidneys to “wake back up” and begin functioning like they should, removing fluid from the body.

They were not concerned with it. To them it was a normal part of the process.

But it worried us.

At this point, she still had a breathing tube, was using a catheter to release as much fluid as they could (which was very minimal), and had wires & IVs attached all over her body.

The days slowly passed.

Doctors and nurses came in and out of the room like it was a revolving door. There was so much commotion all around LB; yet, she just silently layed in the bed, moving every now-and-then. It was like watching two completely opposite worlds collide in one room.

After about two days, she began releasing fluid and her swelling went down slowly.

She was still heartbreaking to look at.

Not only did she look sick, but now she didn’t even look like herself.

As the days went on, she began to become less sedated and more active. The breathing tube was still in, but she was quickly becoming restless.

One moment I will never forget is the way my heart shattered while watching her cry, in pain, with the breathing tube in.

It was as if we were deaf, unable to hear any noise, but able to watch her squirm around in discomfort. Her face was red, tears were streaming, and lip pathetically poked out. She was “screaming crying” without the actual screaming. The breathing tube would not allow her to make noise, and I think that made her even more mad.

I just stood there rubbing her, kissing her face, and trying to comfort her any way that I could. With each silent cry, I felt my body get more and more heavy.

It was so hard to watch your baby struggle with discomfort, unable to express themselves, and offer no sense of relief for them.

Thankfully, she began to use the bathroom without the catheter which allowed them to remove her breathing tube.

At first, she struggled with finding a good rhythm breathing on her own and she remained on oxygen.

But, like we have witnessed her do in the past, she let the doctors know when she was ready to move forward.

Like she had done once before, she worked her little fingers up, under, and around the oxygen tube and took it out on her own. She knew she was ready and there wasn’t a doctor there that was going to tell her any different!

It amazes me, til this day, the amount of determination and fight that she has in her at such a young age. She knows her body better than any of us do, doctors included, and she seems to always try to remind us of that.

When they are telling us that she will need oxygen assistance for a few days, she shows them otherwise. Every time.

From then on, we quickly learned that this part of her journey was based on her timing – and patience wasn’t something she was willing on learning just yet.



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